A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

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Monthly Archives: November 2015

Martin attends our church’s Tuesday after-school program for kindergarten-through-fifth graders. Because the program is volunteer-run, and because I want Martin to participate as fully as possible, I send an aide with him. The aide, Janine, is a special-education professional whose assignment is to ensure that Martin is included, to help Martin with any projects or activities that might otherwise overwhelm him, and to back off whenever Martin is able to handle the situation unassisted. I would accompany Martin myself, except that my presence is nothing but a distraction. When Mommy is in the room, I’m afraid, Martin has eyes for nothing else. Besides, who wants to play with the kid whose mother is hovering behind?

I can’t say that Martin loves going to the Tuesday program. He tries to get out of it whenever possible. (“I’m so tired!” “I don’t feel well!” “Oh, I just want to do my homework.”) Compare that with Sunday mornings, when Martin eagerly accompanies me to church and participates in children’s Sunday school. I don’t know what accounts for the contrasting attitudes. It could be that Tuesday afternoons he is exhausted from school and wants time alone, or that the Sunday school teacher (Sundays he has no aide) lets him get away with only minimal participation. It could be that he doesn’t like having an aide, although he’s never asked to attend Tuesday alone, only to skip the event altogether.

I wrote that verbose introduction to establish that although I am not present at the Tuesday after-school program, I know a lot (through Janine) about what happens there. (Perhaps I got distracted from that point.) Often Janine’s report is super: Martin was asked to light the candles and did so without help; Martin sang along in choir practice; Martin played tag properly in gym; Martin raised his hand and answered questions after storytime. Some weeks Janine’s report is tougher to swallow, such as the two occasions on which no one wanted to hold Martin’s hand during the prayer circle. (He was in the grip of allergies and probably using his hand as a tissue.)

This Tuesday, Janine said that the gym teacher, who usually has the kids count off or otherwise randomly divides them for sports and games, decided to appoint two team captains and let them pick teams. Remember those days from grade-school gym class? Two kids stand up front, pointing to the best athletes first. The chosen teammates join their captains, relieved. I remember well. I was usually the first girl chosen, and I liked that. I also understood why the teachers stopped the process when half or two-thirds of the kids had been picked, and just split the left-overs between the teams. This Tuesday, at the church, the gym teacher didn’t do that. He let the picking go on and on, right down to the very last kid, on and on until only one kid was un-picked, until there was only one kid standing alone, unwanted by either team.

I’m sure you know who that kid was. Take any group of typically developing grade schoolers, mix in one kid with autism, and see who gets picked last.

Martin did not show any overt reaction, Janine reports, but it is always hard to tell what he’s internalizing.

I hate when things like this happen. I hate the insensitivity of an adult who would let that happen. (Next Tuesday I will show up at the church a few minutes before the program begins and explain to the gym teacher, in kind and polite words, the effect of his decision on my son.) I hate wondering how much Martin’s self-esteem suffers from his difference, and the irony that our efforts have improved his awareness enough to know that he’s being left out, but not enough to know how to fit in. I hate wondering whether Martin will ever be fully included.

I also hate dealing with these questions at this time, because Adrian and I are facing a difficult decision. Since kindergarten (he’s in second grade now), Martin has attended a wonderful self-contained special-education school. His class has twelve students, each with autism or some other type of disorder that affects the ability to communicate. The pupils are bright, and they soldier on under the “common core” standards now stamped onto our public schools as widely as vaccination requirements. Adrian and I have realized, however, that Martin is perhaps not being challenged academically; his homework packet takes him no more than ten minutes to complete, and about eight of those minutes are dedicated to arguing with me over whether he can illustrate the homework because he’s bored. Adrian and I have wanted to believe that, even if Martin isn’t challenged academically, at least he has social role models; half the kids in his class have language challenges but no particular social impairments. On the other hand, over the past year, Martin has made enough progress, socially, that he is nearing the level of those social-top-tier classmates. So now what? What is the next level that Martin can reach, if he remains in his self-contained special-education school?

For that reason, we are considering attempting to find a private school, with small general-education classes, that would be willing to let Martin come to school with an aide, at least for the first year or two. Martin might not be ready, yet, to make the jump to general education. Moreover, it would be a one-way street; if we pull Martin from his current school, we will likely lose his placement there, and have no option to re-enroll him. On the other hand, we know that elementary curriculum (public school, or private) becomes advances rapidly in third grade, requiring more drawing conclusions and making inferences. If there is a “best” time to more Martin out of special education, we may be approaching it.

Then I remember what I hate. Even if Martin isn’t challenged in his current environment, at least he’s safe. At least he’s neither bullied nor left standing, alone, when the teams are picked. At least his self-esteem—maybe his most fragile attribute—is padded and protected.

To leap, or to stay safe? Even on that everyday question, autism leaves its mark.

For the first three years of Martin’s recovery journey, candida—yeast—was my constant foe. Before we started biomed, before I understood Martin’s health issues, Martin itched constantly. Self-inflicted scratches marred his legs and backside. The fancy dermatologist diagnosed “sensitive skin” and advised us to use Cetaphil or CeraVe products (!), which helped nothing. Once I realized that Martin’s constant itching and some of his bowel issues were connected to candida imbalance, we started to tackle the issue with diet and supplements, and we made progress. Nevertheless, yeast is tricky. If you get it under control in one form, it doesn’t wait long to rear its ugly head in another form. We clashed again and again, yeast and I.

Two years ago Martin started taking Candex. We’ve had the most luck with that product, and we haven’t really had a major yeast battle since.

And now—he’s itching his legs again, and asking me to rub cream on them. He has those stupid scratches. I snuck into his bathroom and witnessed a “fluffy” poop. (Sorry to throw that in unannounced! It was quite shocking to me at the time, so I decided to go for effect in my reporting of the incident.) Plus, he’s silly. So silly. Inappropriately laughing. Cracking himself up. Disrupting his school class. Silly, sill, silly. The situation isn’t out of control, but it sure isn’t great.

Is this a yeast flare? If so, what could be the culprit behind this yeast flare?

Possibility: Having been so many months without substantial candida troubles, I’ve loosened up Martin’s diet to allow more sugars. He’s eating daily fruit, including homemade vegetable-fruit juices, and scattered starches (potato) and carbs (quinoa, brown rice). (Wait, did you think I meant refined sugars? Oh, you made a funny! Martin never gets refined sugars.) Those foods feed yeast. I may need to tighten the diet back up.

Possibility: Especially as he’s working through his past immune insults, Martin gets healing reactions. His recent allergic attacks, for example, may be related to clearing vaccines. (The cats are another story.) Vaccines—indeed, any injections, as I understand the process—are notorious provokers of something like allergic reactions. Clearing vaccines, moreover, can cause silliness and inappropriate laughter. Maybe, in this kerfuffle as Martin’s body heals itself, it (1) loses track of yeast, and (2) compounds the problem with symptoms that mimic a yeast flare.

I don’t know if this really is a yeast flare. The symptoms are there, but symptoms can be deceptive. (Like, for example, the symptoms we call “autism” can be deceptive.) I hate the thought of having to conquer this beast yet again.

Eons ago, in college, my friends and I used to drink dollar pitchers of Milwaukee’s Best at happy hour. We called that cheap beer “the beast.” That beast—that yeast, that hops, that barley—was so much better than this.

This isn’t the beast! This is the cutest little man ever. Martin, at play, Mountain View, California.

I am a parent, obviously. I hope I am a good parent. I have a son, and I adore him. I try to help him. He seems to be doing well. That’s enough of parenting, right?

I was in Manhattan and walked by a playground full of preschoolers and kindergartners, and even some babies and toddlers. The kids were chasing each other and calling out, climbing, jumping. Some adults were interacting with kids. Others sat on benches and chatted. It all looked so normal. So typical.

In a moment I felt the full impact of our decision—Adrian’s decision, and mine—to have only one child. Martin is seven years old now. Every day he’s closer to recovery. Every day he’s more like typical children. Nevertheless, even if he were to shed every last vestige of autism this very day, I will never have the experience of parenting a typical preschooler or kindergartner. I will never know the experience of those playgrounders. My experience of typicality will begin only with an older child.

What are the analogies to this situation? Adopting an older child? Certainly not. I’ve had a child for seven years. I’ve been parenting all this time, just a different type of parenting. Have a child who transitions gender? Maybe sorta like that. First you have one type of kid, and then another, but the child stays the same and you love that child either way.

I will never get to be the mom who Pinterests craft projects with her preschooler. (Not that such an outcome was ever likely. I am who I am.)

I will never put a kindergartner on the bus, first day of school, and wonder whether he is going to make friends or like his teacher. Two years ago, I put my kindergartner on the bus, first day of school, and wondered whether his teachers would understand the importance of restricting foods not on his “acceptable” list.

And what of Martin, who has been deprived of typical preschool, of typical kindergarten, of typical grade school so far? He will never have those experiences, either. Years from now, when his friends ask, “Remember in second grade when we were all into Captain America? Remember peanut-butter-and-jelly sandwiches?”, what will Martin say?

I am a parent. I hope I am a good parent. I have a son, and I adore him. I try to help him. He seems to be doing well. That’s enough of parenting, right?

I’m on a plane back to New York, from Texas, where I’ve just abandoned one of our three cats, Levi.

Maybe “abandoned” is too strong. I flew with Levi to Texas in order to deliver him, personally, with boxes full of supplies, to a new home: a mother and two kids (ages 11 and 7), who are welcoming him with joy, and who intend to house him forever. They’ve had cats in the past, and now they have Levi. They are friends of one of my close girlfriends. They will let us visit Levi whenever we are in town at my parents’ home. It’s a close to perfect as I could hope for.

Still, it feels a lot like I’ve just abandoned Levi.

I’ve had cats, between one and four cats at a time, since 1994, when I adopted Tiny Rachel. As of next week, when Freddy and Edith move together to their new home, I will have no feline companions. I will have given them up.

After Martin started wheezing, we had an allergist run a blood test and a skin-patch test. The skin-patch test involved a dozen allergens being pushed into Martin’s forearms, and then he and I waiting 15 minutes to see if any reaction developed.

A reaction developed. Not after 15 minutes. Immediately. One allergen among the dozen swelled Martin’s skin into an angry red bump. I looked at the chart of allergen placements to see what was causing the reaction.

“Cat.”

Cat. Martin was testing allergic to cats. Severely allergic. I could see the reaction with my own two eyes—two eyes that begin to fill with tears. Martin is allergic to cats. We’ve had cats since before Martin was born, obviously. Martin has never lived in a home without cats.

How? I asked the doctor. How could this be? Before this summer, Martin hasn’t had allergic reactions. The asthma is brand new. How, when we’ve had cats his whole life, could they now be contributing to allergies and asthma?

The allergist, whom I could call a traditionalist, came up with two possibilities. First, animals living in a home are known to reduce the incidence of childhood allergies. Maybe, by having cats since Martin was born, we diminished what otherwise would have been a more severe allergy, and also staved its onset. Second, given that both my older brothers and my mother are allergic, Martin has a genetic predisposition to cat allergies (which we have always known). Maybe Martin just developed his allergy later.

I am not a traditionalist, and so to the allergist’s possibilities I added a third: Maybe Martin has always had this allergy, and until now his immune system was not healthy enough to mount the proper response. Maybe, in all the work that we have done to heal his gut, we have fostered Martin’s allergic response. The cat allergy is a bad thing. Martin’s ability to mount a proper response for the first time, if that’s what’s going on, would be a good thing. Immune systems are supposed to respond.

The very night Martin visited the allergist, Adrian and I went out to dinner (without Martin), I told him the test results, and we decided that we had to rehome Levi, Freddy, and Edith. The other options were unacceptable. We couldn’t have the cats live in the basement; the basement’s ventilation and duct system carries airborne allergens to the rest of the house, too. We couldn’t make the cats into outdoor-and-garage pets; they are essentially lap cats who seek and want constant human interaction. We couldn’t keep the status quo; Martin is rubbing watery eyes, coughing through the night, wheezing after exercise.

That being said, Adrian and I both believe that we have a lifelong obligation to our companion animals. There was no discussion of taking the animals to a shelter or moving them immediately to suboptimal homes. Levi, who enjoys spending time outside and doesn’t respond well to other cats, especially male cats, needs a home where he can safely go outside, and preferably be the only cat. As to Freddie and Edith, we adopted them together because they were bonded to each other. They’ve been with us almost eight years, and nothing has changed. They are best friends, reliant on each other. They must remain together.

We got lucky. I sent a message to friends and family members, nationwide, who know how we’ve struggled with Martin’s health. They spread the message wider. Within a week, the Texas family had come forward with an offer to adopt Levi. Within three weeks, we had found a lovely woman who has taken in many older cats over the years. She drove 90 minutes to our house to meet Freddie and Edith, and then decided she would like them to join her family. We aren’t out of the woods yet. Before we can declare the adoptions a success, we still need to see each cat flourish in his or her new home. But so far, so good.

So far, so good when it comes to finding suitable homes, that is. When it comes to my emotions—so far, not so good. The worst, for me, right now, is my old pal guilt. I feel guilty toward the cats. I love them, and they are my responsibility. The first night, when I told Adrian that Martin is allergic, he looked plain defeated as he asked, “Why? Why now? George is gone. Our house is under control. Everyone is happy. How could this happen now?” I feel guilty toward Martin, too. How long has this allergy been an issue? How did we not realize it? By having cats in our home, have we been unwittingly hampering Martin’s recovery? Precipitating further immune troubles?

There’s fear, also. I dread receiving a phone call that one of the cats, traumatized by changing homes and families, has developed a behavior problem or run away. I dread hearing that one of the adoptive parents has decided not to keep a cat and surrendered him or her to a shelter, or to someone I don’t know. Is this likely? No, of course it isn’t. We have found “cat people” to adopt our cats. We’ve asked them to agree that, if ever they can no longer care for the cats, they call us to come get them back. They have assured us that, in the unlikely event they can no longer care for the cats, they will indeed call us to come get them back. They are going to provide updates and let us visit the cats. Nevertheless, once the cats leave my home, I am no longer in control of their welfare. Therein arises my fear.

There’s hope. I hope that figuring out this impediment to Martin’s well-being, and removing it, may hasten the remainder of his recovery.

There is a pesky emotion that I don’t want to admit. Every once in a while I sense a flash of something like relief, a feeling that fewer worries in my home (yes, I worry about cats; I worry about everyone in my home) will improve my well-being.

And then I cycle back to guilt, this time guilt for having felt something like relief.

I have to leave this post now.

Update: I drafted this post 10 days ago. I have already received several updates from Levi’s new family, pictures with captions like “snuggling inside on a rainy day.” That helps. Yesterday, November 1, Freddie and Edith moved to their new home, together. This morning I overslept, because Edith did not wake me to give her breakfast. Despite the good news from Texas, I feel devastated.